Invisible

This post is a little different and a little more personal.

Several years ago, an inspiration struck me. Partly as a coping skill, partly as a creative outlet, partly as need to express it one way or another, I started writing poetry about my family’s life with chronic invisible illness. Some serious, some sassy, and there are a few parodies that I’d like to think are funny. I will share some of my writing here. Let’s peel the curtain on what some of our behind-the-scenes look like.

Invisible

“But they look so healthy…”


Bleeding insertions, painful injections

Grim complication from simple infections

Day-long crippling hangovers

After nights of relentless highs and lows

Nausea, headaches, tears

Exhaustion, frustration, fears


Our daily behind the scenes

Invisible, unknown, unseen


“So they just need to give insulin?…”


Complex estimations and calculations

Taking every bite into consideration

“Good” foods, “bad” foods, foods impossible to control

Doing everything right but getting everything wrong

Dose too little and pay for it dearly

Dose too much and it can be deadly


Our daily behind the scenes

Invisible, unknown, unseen


“They can live a totally normal life…”


Sleep disruptions, life interruptions

Hundreds of extra daily decisions

Cancellations, detours, disappointments

Appointment, appointment, appointments

Spontaneity frequently abandoned

Never leaving home empty-handed

Refrigerator full of medication

Bags of medical supplies on vacation

Extensive information, embarrassing questions

Requests for disability accommodations


Our daily behind the scenes

Invisible, unknown, unseen


Behind every attempt at normalcy

Behind joyful moments lived carelessly

Behind thrilling athletic accomplishments

Behind mastery, competence, confidence

Are our daily behind the scenes

Invisible, unknown, unseen



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Planning for Spontaneity: Vacationing with Chronic Illness